Tuesday, April 08, 2008

My Night Owl

It’s after 10:30pm and Jack is still awake. No matter what time he wakes up in the morning, Jack rarely falls asleep before 11pm. I told him last night that this has got to stop because I need to get to bed earlier. I try and have his night time routine done by 9:30 or 10pm, hoping that once I turn off the light he’ll go to sleep. Jack, however, has a little trick for getting me back into his room – he finds a way to increase his heart rate. His heart rate will be in the 70s all evening long, but as soon as the light goes off, his heart rate jumps to the 120s. There’s nothing wrong with him that I can tell, it’s just his way of telling me to “get back in here”. It always works. I suction and get nothing, I check his diaper – it’s dry. I check his positioning, the vent circuits and anything else I can think of and everything usually checks out fine. It’s now to the point where I lay down with Jack every night until he falls asleep.

As I lay in the darkness of Jack’s room, the sound of the ventilator menacingly shatters the silence of a sleeping household. As I listen to the ventilator, I think to myself, “How did we get here?” How did that little boy in the first picture on my blog banner become this child sleeping next to me. How? It’s in the darkness of Jack’s room as I lay next to him, holding his hand and listening to the rhythmic whooshing of the ventilator that the tears no one ever sees fall.

The highs and lows of this journey are so extreme and unpredictable. It was only two weeks ago that I was on cloud nine – so happy and excited about Jack’s new communication system. My state of happiness was so short lived. The joy of knowing what is possible for Jack with the new system is tempered by the reality of what is required to make it possible. A lot of work, a lot of time and a lot of patience - none of which are at the top of my “best attributes” list. If only I could close my eyes, click my heels together and wish it to happen.

Not too long ago, I was told by someone that I was one of the most unselfish people he knew. While I appreciated the kind words, nothing could be further from the truth. If I was unselfish, I wouldn’t hate the ventilator, I would be thankful for it because it is keeping Jack alive. Instead, all I can focus on is how it disrupts my life. To me, the ventilator symbolizes everything about this life I hate – confinement, dependence and lack of control. It is a constant reminder of what has been stolen from me, from Jack and from my family because of Jack’s disease. If I was unselfish, I would stay focused on all the wonderful things Jack will be able to do with his new communication system instead of on how much work it's going to take to make it happen. If I was unselfish, I'd stop dwelling on how unhappy I am and appreciate the fact that, in spite of it all, Jack is happy.

My secretary told me today that I was grumpy. You think so? I used to be pretty good at separating my home life from my work life and putting on a good front at work. Not so much anymore.

Tomorrow is another day. Hopefully, this roller coaster I’m on is headed UP, on its way to a happy place. If not to a happy place, at least to a place of contentment. Contentment is easier to sustain.

It's now after midnight and Jack is finally sleeping. Time for me to steal away to the couch in the family room. The only place in the house where I can sleep and be close enough to hear Jack's alarms should they go off, but far enough away that I don't hear that damn ventilator.


Anonymous said...

I am truly sorry that you are having a sucky time. Some days are harder then others.
You are entitled to hate that damn vent. It really is a pain in the ass. I would like to chuck my kids as well.
I hope that you get to your state of contentment soon enough sister.

(I love the new look)

Anonymous said...

I'm sorry that you are having a grumy go of things right now, but I understand. Grumpy is the new happy! It is hard not to loathe the machines that are so much a part of our children's lives even if they do save them. They are very noisy and some of them smell very bad. Sending big hugs to Jack and to you.

Anonymous said...

I figured Jack taught Jacob that heart rate trick. Sneaky boys! I think you, Tess, and I should have a bonfire and burn the vents.

Contentment...if only it weren't interrupted so very often it wouldn't be too bad.

((HUGS)) Amanda

Melisande said...


To put that into words, is not simple. To communicate our feelings of powerlessness....not an easy thing to do. You do it well. You speak for us, for Jack, for the way things should or could be. Words that a too true and need to be said because they are a part of our experience. Why? I wish I knew....

Love you, Ann!

Rachel Marini said...

I have tears in my eyes because I can so relate. Ann, Shaun and I had the greatest time at the Hyatt Regency. It was a beautiful, ritzy place. We enjoyed doing things together that we NEVER do like putt-putt and ping pong. But like I'm sure you can relate to, we couldn't *truly* get away... Gabe got sick that weekend, and he was really doing bad :( Lots of phone calls and worries... I am so grateful for the weekend. You have no idea. Unfortunately all Gabe's medical issues have totally overshadowed our break, our fun. Sometimes I do feel like the most selfish person in the world. I can completely relate to how you feel about the ventilator except you've been doing it much longer. All I can say is your feelings are totally just. If anyone else had to do it, had to live your life, they'd feel it too. May Jack continue to be happy :) and healthy, despite that darn vent... and you, content.

julie w said...

Ann - it is good that you are able to be so frank. I teared up reading this blog thought. I can understand how you hate the vent - I hate the Oxygen concentrator, I could just throw it out the window some days! You are entitled to be selfish, hell you deserve to be! Sam rarely goes to sleep early either, but he just stands in his bed and rattles the bars like a wrestler and the noise is horrific, I'm sure he is going to break the doors of his very expensive bed!!
Sending lots of feel happy vibes across the pond.

Cindy said...

There are so many unhappy people in the world, people who seem like they have it all. And there are those people who have huge obstacles, but have somehow found happiness. I really think we can be as happy or as unhappy as we make up our minds to be. True that our kids make life more challenging, but if they are happy, isn't that what most parents want for their kids?

Of course, none of us are always happy, but what helps me through the tough times is to think about what I have, rather than what I don't have. I think about kids in other parts of the world who are starving and there is nothing Mom can do about it. You can't change Jack's disability, but you can change your perspective. Try not to be jealous or angry at the "norms" or their typical kids. Most of them have very average, boring lives compared to ours;-) You are not missing anything Ann, it's the norms that are missing so much that our kids have taught us; life lessons that can only be learned the hard way.

Anonymous said...

You never cease to amaze me with the flow and ease of words translated into such a "picture" of communication. I can just see you, walking back into Jack's room, the automatic actions of your hands checking and rechecking and then your own hand settling into Jack's. Such a sweet picture. You must have been an author in another life.
I think Cindy has it pegged. Regardless of the ups and downs, the "normals" have nothing on you. You are incredible and Jack is awesome. Be and just be. Be grumpy, be happy, be melancholy, be estatic...you truly know what all the levels of "being" are and have lived them to the fullest. Again, the "normals" have nothing on you.